What to do about "Shadowing?"

My grandfather (the most dignified of all men) did exactly this in the last few months of his life. Grandma (and angel on earth) dealt with it alone, mostly, and some outside help from family. She could barely turn around and there he was. He was also an escape artist and would wander up and down the street. All that could be dealt with, and was, with love and humor and some respite for Grandma, HOWEVER, once he became violent...he hat to be moved. At that point he didn't know who anyone was, so it was harder on Grandma than it was on him. He passed 2 weeks after moving into the facility. You don't say what your husband suffers from, dementia? Alzheimer's? Hopefully he can be "retrained", as the other posters have suggested. My husband, when he's home alternately ignores me completely or stands so close to me I feel like I'm going to scream. (He's 6'5" and I', 5'2" so I feel like a giant is breathing down my neck. He doesn't "feel" like he's in my space--but I get panicky when he "shadows" me, and he's perfectly healthy.) You do need to get some help or you're going to lose it and then where will he be? Sounds like you have no respite help--I think everyone who is caring for a loved one needs a good deal of personal time, if possible. Caregiving is exhausting.

I agree with annettesrose about setting boundaries. Some might say it is not possible with dementia, but it is worth a try. My husband has Lewy Body Dementia, 7 years now and he is mid/late stage, but he understands things on some level, even now. So I explain things that he would have understood in the past. Kind of like you would to a kid.

When he didn't want me to spend time in the computer room, I told him that I had given up my job to take care of him, BUT I needed my own space and time to myself. Explained that since he was watching TV/sleeping on the couch, I didn't need to be there. I had things I enjoyed doing on the computer. He had his favorite show, which I keep backup of recordings, and he was ok. I could hear him, if he needed help, just say my name. Even now, he comes to check on me every once in a while. So, I ask if he needs something, then try to guess what it might be, because he cannot say, OR I tell him that he is ok, I am ok, and I'll be in there soon, dinner will be soon, or whatever.

He also objected to caregivers. So I told him that the only way I was going to be able to keep him at home, as long as possible, was if I had help. So, if he wanted to stay at home, we had to have caregivers. Then I make sure the caregivers do something he likes, such as play a game. He can't remember how to do a lot of thing, but he can remember simple games, like go fish, uno, etc. He also gets favorite food that he doesn't get, when I'm home. In the beginning, I made a deal out of, you get to do this today...yea!

I've also heard, but have not had to try scheduling potty times, i.e. reminding them or having them go every couple of hours. Maybe even have them go right before you need to do something and you know that is the time there are "accidents." I try to do this, when I know we are going out, because sure enough, the minute we get in the car or store, he has to go and dealing with potty issues in public bathrooms can be a nightmare.

When my husband didn't want to wear pads, I asked what would be more embarrassing, wearing a pad that no one knew about or wetting his pants in public, because he couldn't hold it. Then suggested that we try it and see how it worked. Used the pads that fit into his regular underwear. When they were not enough, he was fine with the pullups. I haven't tried this yet either, but have heard about using packaging tape to keep their pullups on. Then you have to cut them off, and there are scissors that hospitals use, with rounded ends to avoid puncturing someone.

If you can't get him placed quickly, I would try adapting the environment. Repositioning furniture might allow a little space between you. A shop stool or bar stool with armrests placed near the sink might enable you to place it so many inches away and at an angle that allows him to see you. A "pull up a chair" arrangement might keep you in his line of sight and give you a little breathing room. I like the idea of playing the music too. If you need to, put a radio in the vicinity and maybe play a good oldies station. If the computer is nearby - you may be able to play some on-line music stations or insert a music disk - especially if that is the one room in which he doesn't shadow you. Positioning a large, attractive houseplant (real or artificial) in a strategic location might create a little buffer zone within a line-of-sight that tells him you are present. Carrying the clean laundry to the dining table and folding there might give you a little space - he can see you and maybe at least sit or stand away from you. Addressing both his and your needs for the bathroom just screams crazy. If he can't control bowel movements and is this scared and insecure that he needs to shadow you even to the bathroom, these are good reasons to start home health care while awaiting placement. If he becomes hospitalized, I do believe you can refuse to bring him home. This means they have to find a placement for him. I would inquire about any assistance programs and start preparation for the Medicaid application process and go from there. You need him placed so you can have a life and your privacy. He needs to be kept safe and secure and you need to reclaim your life. Make sure providers address your needs too. It's about both of you.

New2This ~ I can totally relate to your post!

Oh my gosh, Wam, shadowing! Finally a name for it. I think a whole lot of guys do this, (even the healthy and young ones), and I think it drives most of us girls nuts! Yours sounds worse, am sure that it is due to the disease process, but don't feel completely alone with that one. :-) I've seen my husband, best friend's husband, stepdad, even my grandpas do this! I don't know if they think they are "helping", if they are bored, love us too much, or are subconsciously following along, uggh, I've never figured that out. Get an important phone call, fires up the vacuum he hasn't touched in 2 months. Take phone in other room, comes to vacuum that room. :-) Start to wash up the kitchen counters, turn around, he's blocking the sink cleaning up something like the humidifier, making a total mess, gonna be a while, thinks you should stand there and wait on him. (?) Oh, you'll like this one. Got some little flower plants, left in garage to be planted when I had time. Saturday morning, he announces he's going to trim around the back yard. Takes miles of electric cord, weed trimmer out back inside large wood fence, it's a huge yard, going to be a while. Great. I go out front where the little plants are going to go. Set them, my spade, watering can, box of bone meal down, go inside to get some gloves. Come back out, a peaceful beautiful morning, ready to make my little creation. Electric cord is now plugged in out front, back gate is open, he's working right by where I need to plant, back yard not even close to finished, but he abandoned that mid stream, (when he realized I was going to work there, I guess). Box of bone meal is now on it's side spilling, plants are 1/2 smashed by electric cord, which is wrapped around the watering can. Ummm? He's happily blasting away on the grass near the foundation a few feet away. "Are you done with the back already?" "Hugh? No, I just decided to move out here for a while". I have no idea what goes through their brains, but it is quite maddening. :-) My Grandma's and Sister had a rule, no one in the kitchen while I am cooking. They'd flat say "out of my kitchen!" if someone violated that. Now I see why, and I have recently applied, and am reinforcing that rule and it is working out. Otherwise the second I start cooking he's 2 feet from me blocking access to fridge, sink, etc., getting himself a glass of ice water, washing his hands, something like that while the meal burns, ...

I've heard of the community spouse rule another poster mentioned, it allows for the independent spouse to keep/own a home that's valued under a certain amount. I didn't realize the gifting rules were so tight, a small gift to a grandkid at Christmas doesn't seem unreasonable, but I don't know the rules. I do think I'd speak with the medicaide office directly and then I'd probably follow up with an ATTNY as well to be certain. I think you may be in a better position than you think though. Hang in there!

Do you remember raising children who may have done the same thing? Follow you everywhere, and needing you desperately when you were on the phone or giving your attention elsewhere?
What about the dogs. Have they also been dominating you by demanding all your attention?
Well, these are all behaviors that need boundry setting. Time to get creative and learn to say no and stay.
Dementia kicking in compounding this problem now?
Put pants with buttons and snaps and belts in order to stop the pooping. Hire a P/T Caregiver to start a new toileting routine and establish the foundation for this. He will get used to the idea of allowing assistance and you will acquire the freedom that you 'desperately need' at this point. Do not ignore this.
Give him something in his hands to hold when you are working. try a variety of things until you hit the one he likes to hold. And then let him be with it as you continue with your work. It is not relevant what he does or does not do with the object he holds. As long as he is busy with it doing something. And he is not in danger. Let him alone with it. Do not try to help him, teach him or tell him what to do with his object. And, if he continues to ignore all the objects you hand him ignore that 'behavior'. Eventually he will pick one of them up.
Do not cater to his every whim or every need. This will only reinforce his neediness and dependence on you. Like the mommy bird that let the baby fly, you too will learn to practice observing what your loved one 'can' and 'can not do' and then you will start guiding him to 'do' what he 'can and you will learn 'when' the other things need to be done, or 'not done'.
Again, I suggest hiring P/T help at this time to help you 'pull away' a bit. This is healthy and safe for both of you.
In the event you have been a codependent person all your life, have enabled others to lean on you and control you for too long, get someone to talk to immediately. Or else you will be looking at two options. 1) Go under 2) Tip over.

My husband did the same types of things! Couldn't go to the bathroom or even downstairs to do the laundry without him following me, pacing outside the door, etc. He also talked about sex all the time. After trying several meds, our doc put him on Elavil (amitryptiline) and it has helped a lot. Now instead of following me, he sits in his chair and pounds on it when I am out of the room. At least this is better than before.

My husband, as a last resort, went into a Behavioral Clinic in Baltimore, he was there for 31 days, Medicare paid all of it, it will soon be two years with no titration of meds, plus I still get to take my husband to that same Dr ( psychiatrist ) every three months and Medicare covers all of that. Nancy you would need someplace closer as its just not a "respite" drop off, you must be there with him every day if possible, the reinforcement is what works. Don't look for pretty, these sections below or buried in beautiful Nursing Homes are the pits, not facility wise, but patient wise, it's a locked ward with the craziest of crazies, just prepare yourself. For me it was worth it, I was told from day one he would never be able to come back home, that made me even more determined to help make that not be the outcome. If they can not make it in a Behavioral Clinic, next step is him being placed somewhere other then home. You have hung in there this long, give it a try. P💜💜💜💜💜

Babalou is right. You need more information.

Wam, when did you speak to an eldercare attorney. And was that person cerified? I've not heard of a medicaid lookback of 7 years, but that may be true in your state. I would confirm that with Medicaid.

You don't diqualift yourself by gining small gifts, but yhere may be a "penalty", a period of time during which Medicaid won't pay for your husband's care.

You are right, you don't sell the house to pay for his care, but even if he goes into a faciliry on Medicaid, you would still be able to have the house as a community spouse, a spouse not in a facility. I think you need to get clarification on some of these issues.

Behavioral clinics aren't everywhere but I'm delighted to hear that insurance paid. It's worth a try. I've read enough about it to know that a certain percentage of people improve in their behaviors significantly because of the therapy. It's worth checking into.

Glad to hear that things are better today! but do go ahead and check on the clinic. And ask them about payments, etc. They have all of the information and know how to put things together..

Hang in t here!

Please know that this is fairly normal behavior at some point in the dementia process, especially in case of Alzheimer's. You may be able to distract him by giving him a task to do - fold washcloths while you go to the bathroom, wash veggies while you are making dinner, sweeping while you get dressed, etc. This may not always work but it is helpful when it does.

Getting upset will not help either of you. It generally just makes both people act in worse ways. It escalates the situation and no one is helped.

His violence directed at you is of concern. You need to be safe. It is not uncommon for a person with dementia to become physically aggressive but there are limits to what you can handle in a home setting by yourself. You do not have to leave yourself in a position of being hurt. Just think, if you are hurt then who will care for both of you?

Perhaps it is time to consider moving him into a facility which could provide the care he needs in a context which may be more safe for both of you.

That is the first I have heard of a Senior Behavioral clinic. I willow it up. He had such a good week prior to that shoving incident. He did not hurt me and he settled down, but if he had hit me he would be in a home by now! My problem is money. I was told by an Elder Care lawyer that the look-back is now 7 years and he told me years ago that I could not give birthday or Christmas gifts to my grandchildren. Not even a check for $50 so I have not obeyed that rule. I attended graduations and weddings and baby showers where I gave gifts. So I know that I have disqualified myself from Medicaid. I only have enough money for about one year. And that is the life insurance money that have been saving for about 33 years for my old age. I do own my house and I will not sell it to put him in a home. An elder care lawyer told me never to give up my home! I don't really know where to proceed, but it is coming to a head. I figure he still has about 4 years left because he is in perfect health and walking well . He is also in the final stage of Alzheimer's. Thanks for suggestions. I am fine and so is he as of this morning.

I'm wondering if it isn't time for memory care. If he was shoving you around, there could be more physical abuse to come. As was mentioned - for both of you it may be best to get him care by professionals.

You need time to yourself and you need to protect yourself. You are trying your best and doing well but there is only so much you can do. Violence against the caregiver is not uncommon. Your husband can't help it but you shouldn't put yourself in a position where you can be seriously hurt. With him in memory care, you'll be able to see him and be his advocate but should there be a physical attack you can get help. You can leave and get away from it. This is a hard decision but sometimes the best for everyone.

Please update us on how you are doing.
Carol

This is an extreme case of what I am mildly experiencing.

My husband stands in front of me in the kitchen all the time. I know what you mean about having to move around him. It is so frustrating that he doesn't see that I need to move to fill something with water and will let me walk around him. He doesn't have dementia, just memory loss a bit, but he has trouble moving.

I don't believe there is anything you can "do" as such in the home to stop this. But the right meds might lessen his anxiety so that he would stop doing it. Has he been seen by a geriatric doctor?

I have written many times that my mom was impossible until we took her to a Senior Behavioral Clinic. They are everywhere now. My mom was there for ten days and they watched her intensely and fine-tuned her meds. Like night and day. The loss of memory causes anxiety, which can become intense and lead to weird behavior.

You will need a referral but start with a googling for Senior Behavioral Clinic in your area. They know what to do. FYI: when it was all over, the insurance paid for everything but $1,000. Well, worth it to have our lives back.

for both your sakes----he has to leave.......you can't take care of all those needs and keep your sanity or even count on being safe......not if he's starting to show signs like that.......start looking now for a nursing facility that can handle him...

Ask yourself what you you want him to do if the roles were reversed and it was you doing the shadowing and he was the caregiver. Then think about what he would want you to do if he were giving you advice with the mind he use to have. Put the two together, come up with a plan, then put it into action.

It's not an easy place at all to be, but it is what it is I'm afraid. Good Luck.

Try music from when u guys were courting u are his constant anchor at the moment have patience he is scared